Sunday, June 10, 2012

Unpredictable days

Our everyday is so unpredictable which is the only thing I can count on. When will he get up today? Will he have a headache? Will he be extra dizzy? Will he be able to talk well and get out his thoughts well? Will he be extra aggitated? OR Will he be pretty productive? Will he want to be "with us" today? Will he be somewhat positive? All those questions leave me at 9:30 am wondering what will my day look like? I remember those days when the weather dictated what the day would look

Sometimes I think "why does my day have to revolve around how Dean will be"? Cant I just plan something and then do it and let Dean do whatever he's going to do? I can't do it. I don't know if it's just the kind of person I am and that the controller in me just needs to collect the proper data about his health? Or if he is truly in danger on his bad days? But I guess I also don't want to test it and find out the hard way. I am always "collecting data" about his health. The doctors always want to know and so I watch and keep a tally of which symptoms go together. Is he more dizzy on headache days? Are his headaches predictable? Is his slowed cognition predictable? I like to be the expert on my husband and he certainly cannot be the expert on himself, so it is my job. That is something I imagine is hard for the people who don't live with TBI in their life to understand.
  1. He cannot self-regulate (I think that's what you would call it). He does not know how to change his activities due to his health. When he gets a migraine, he's laid up in bed...but it's the migraine that's forcing him not him choosing. Dean is pretty one track minded. Every day that he doesn't have a migraine he is thinking one thing - what can I get done today? He is an unstoppable locomotive that wants to be productive and is a genius at coming up with more and more things to do. I've never seen anything like it. I think that's what really tires me! I can't hardly add to my own list because I've got to help him with his list which is constantly expanding! He takes up new projects that require 100 steps each just to implement and he'll have 3 or 4 of them going at the same time. Now to me it just feels like we are spinning our gears endlessly and aimlessly, but since sometimes I actually see progress, I can't definitively say we are just spinning. It may just be how he works. But a non-brain-injured person who had a leg injury or something might think, "oh with my leg, I can't do XYZ, so I'll have to find things I can do"....but not him. He has back problems and mobility issues but his brain injury doesn't take his inabilities into account. I will point out the logistics of something to ask how he is going to do it, and then he will realize "oh, I will probably need help with that part". Yep, that's what I was thinking
  2. He can't self-monitor. He doesn't remember if today was the day he had a migraine. He has no idea that the reason he can't get his words out today is because he was on a bus for 6 hours yesterday with his unit going to a funeral. He doesn't have the forethought to decide not to go to the picnic this afternoon because he has an appointment tomorrow that he can't be wiped out for. I am the holder of all the future plans and appointments and the knower of what activities cause what symptoms.
On the days that he's doing alright, I will take little Dean somewhere and be gone for a few hours. When I return home he has no recollection of what all he did. He can tell me some things...but I don't know how his mind decides what to remember? But the bigger detriment of this is that I won't know how much energy he really expended that day and won't be able to have him go to bed early or to take it easy or use that information to plan ahead. There, though, is another thing that people who don't live with TBI in their life don't much energy could he actually expend by plinking around his garage for a few hours? Every noise he heard was a stress that affected his ability to think or stay focused. Every movement that caused pain was a stress that affected his ability to think or stay focused. So if that day a kid was racing his remote controlled car up and down the street, Dean is more exhausted. If there was some police activity going on around the block, Dean is more exhausted. If some neighbors were weed wacking and mowing their lawn for 2 hours, Dean is more exhausted. Me being gone for a few hours means I missed a few hours of what he experienced and what will affect his evening and possibly the next day.

So I guess I've answered my originial question. It is just too chaotic and confusing for me not to know what Dean can handle tonight or tomorrow and more often than not the few hours of activity I would be going to do isn't worth the not knowing.

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